Friday was bad day!!

[suziepoo]

Made an appointment to see DSN as my sugar levels have been all over the place. They couldn't say who I'd see so went along hoping for some help. Saw a new nurse who said the appointment had to be overseen by Dr A. Said I'd rather not see him - but ended up going in as I needed help.
To cut a long appointment short, I'm a liar because he never threatened to take my pump off me 2 years ago (the reason I didn't want to see him!!).
Despite my levels being all over the place, I'm in the top 20% for control up here! The records I'd spent the last 3 months collating (at Dr P's request) were barely looked at (too much info to look at!!) and given different sheets (yet again!!!!!!!) for collating my sugar levels.
I now have to skip meals here and there to check basal rates. I must also do more night-time testing (makes me too tired for work) and have to reduce levels to avoid hypos. Tried explaining that highs make me snappy, grumpy and naffed off but he was more interested in the lows. Apparently, my highs aren't high enough to be of concern.
Won't let me do DAFNE, pump start session (don't feel I know enough about my pump!) etc but will do individual sessions with dietician, psychologist and nurse - work will love that!! Plus added strain of having to make up the hours spent there.
If I want to meet other diabetics (don't know any personally to meet for coffee and chat to to gain insight etc) then I should start my own! Yet more stress.
Not going back to him again! Don't care if he is now doing more appointments than Dr P (not that I trust him either!!!)
Sorry for the long rant - but am feeling rather fed up with lack of help from up here. 😡

 

[Pumper_Sue]

Hi Suzi, just skipped through your post so please forgive me if I don't understand your problem.
You have been asked to basal test ie skip meals and test. This is normal for anyone using a pump and keeping good control. If you look in the pump forum there's a sticky to help you with the task.
The Dr you saw is trying to help you sort your problem, he can't help you unless you help help yourself. 🙂

 

[Kim23]

Hey Susie, oh how frustrating I don't like doing the night checks or fasting checks either but it does give u a real insight into what's happening. I try and do mine like a Friday night or Saturday night so if I'm tired it won't affect my work - I dunno if you work weekends? If you look or contact Diabetes UK they can tell you where/when your nearest local support group is and so you can pop along and meet up with other diabetics which they will be lovely and support you in any way they can 🙂 You'll get there don't worry. Don't forget the dr's may have the paperwork/books behind them on our condition but WE ARE THE ONES LIVING WITH IT xx

 

[trophywench]

I'm utterly gobsmacked, firstly by not being allowed to go on a carb-counting course - FFS ! - we need it even more (if that's possible) than when on MDI if we want to get Dose Adjustment **** on!

On what grounds exactly is he stopping you?

And secondly because according to the list on the website, no part of Manchester has a DUK support group, and Bury has only a Parents group.

 

[Kim23]

I just googled Manchester support for diabetics and this came up on the Manchester hospital website....

Manchester Diabetes Patients Group
The Manchester Diabetes Patients Group meets one Thursday in the month, 1.30 - 3.30pm at:
The Zion Arts Centre
335 Stretford Road
Manchester
M15 5ZA
The aim of the group is to offer support and a chance to discuss diabetes in its entirety with others who live with the same condition. Healthcare and other professionals also talk to the group on various subjects.
For more information please contact:
Alan Campbell on 07794 886231, Email: Alan.Campbell93@btinternet.com
Shirley Lee on 0161 860 4691, Email: Shirley.Lee26@btinternet.com

 

[suziepoo]

Thanks for the replies.
PumperSue - my only annoyance with doing yet more testing is they didn't look at the data (in the format they requested) for the last 3 months!! Instead, I have to go away, do more testing and give them in a different format! How do I know they won't change their mind again in 3 months?? Plus, this doesn't help me now. A morning level of 18 makes me grumpy, snappy and fed up!!
Kim & trophywrench - sorry but haven't updated my location! I now live in Aberdeen and there isn't a DUK support group here (I asked them when I moved here).
As for DAFNE, I can't do it because I'm already on the pump and therefore it isn't suitable. They will only provide one-to-ones with the dietician - but that means I don't get to meet other diabetics. Again, that's part of the problem!!
Frankly, if this is the best it's going to get, not sure I'm happy to live with it.

 

[Pumper_Sue]

Hi Suzi, I'm rather confused and concerned by your reply.
Are you saying that you do not alter your basal without the aproval of your so called team?
If I were having high numbers like you have stated for morings I would be changing my basal asp. Then doing a quick basal to see if the change has worked.
I have no dsn or consultant my pump is my pocket pancreas and if it's not producing enough insulin I poke it to produce a bit more, same applies if it produces too much insulin it's given a poke in reverse during the probmatic period.

 

[everydayupsanddowns]

Hi Suziepoo

So sorry that you are having the runaround from your team. Not looking at the results you brought in is a real black mark in my book. It is incredibly difficult for HCPs to effectively and properly support people with diabetes, and so often our appointments fall far short of what we expect and deserve.

However... All is not lost. You can make progress, you can nibble away at your problems in your own way and try to make small improvements week by week...

My experience of disenchantment with HCPs and clinic appointments is very similar to your post. What helped me was the support and encouragement I found here, and on other forums.

Taking what has been suggested, here's what I think...

Basal testing. For me this is the absolute bedrock of my D management. If I am having a time of chaotic levels and meal doses/corrections etc are just not behaving right 9/10 it is my basal that is out. Sometimes I can tell it will happen (eg less exercise/activity) but some time there is no rhyme or reason.

Highs. With alarming regularity an increase in my number of high levels is solved by trying to reduce hypos - even just the low level ones. More hypos for me can mean more lows immediately before meals (which means the meals get absorbed MUCH faster than normal... So more spikes... More aggressive corrections... More lows... Rinse... Repeat...). Even if it is just that I am having more, so I become more uncertain and more tempted to treat without testing (is that just me?) meaning that I can treat hypos that never were and send *myself* high. Hopeless!

So perhaps while the advice was offered in absolutely the wrong way, and you felt quite rightly annoyed by it, I begin to wonder whether the techniques that were suggested might not have been too far off the mark?

 

[suziepoo]

I do change my rates without consulting the doctor - when I can see a trend. But I haven't been able to spot any so wanted advice about increasing my insulin without causing hypos.
He wanted me to decrease my insulin to prevent hypos but I explained that I was worried this would increase my highs - as I would be getting less insulin.
Sadly, my highs don't follow a hypo eg I was 18 this morning but didn't have a hypo yesterday.

 

[everydayupsanddowns]

Urgh! Waking up on 18 is rotten

What level did you go to bed on... and what did you eat last night?

If that continues I'd be tempted to test at 3am a few times to get a 'midpoint' reading... or possibly do a full 'every 2 hours' basal test to get a proper picture.

 

[Kim23]

Hey Suzie, what pump are you on? Do you download it yourself onto a computer as looking at the graphs etc on there can be better to see a pattern.

I googled again and this came up if any help?..

https://www.facebook.com/aberdeentype1diabetes?ref=stream